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The Young Adult Male’s Perception of Life with Inflammatory Bowel Disease and a Stoma: A Qualitative Examination

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Abstract

While the experiences of young adults with inflammatory bowel disease (IBD) and a resultant stoma have been investigated in the USA, there is a paucity of such qualitative research in Europe. In Ireland, the voices of this patient cohort have remained remarkably silent. The purpose of this study was to achieve an understanding of the lived experience as depicted by young adults with IBD and a stoma. Purposive sampling was employed. Those with a histological diagnosis of IBD and a consequential stoma within the last 12 months were approached via a letter of invitation. Of those approached, 5 male patients aged 20–30 years agreed to participate. A qualitative approach was adopted comprising a single, detailed semi-structured interview with each of the participants. Verbatim transcripts of these interviews and associated field notes were analysed using interpretative phenomenological analysis methodology. Five superordinate themes emerged from the analysis: (1) Control, (2) Secrecy, (3) Patient education and support services, (4) Difficult emotions, (5) Acceptance and growth. A universal struggle to preserve autonomy of bodily function, emotions and healthcare decisions existed among participants. Participants embraced the predictability of their stoma relative to the restraints imposed on them by their erratic pre-operative bowel habit. Moreover, participants also reinforced the importance of timely patient education in the peri-operative period to limit uncertainty and distress. This study provides a unique insight into the lived experience of young adult males with IBD and a stoma and in particular provides a greater understanding of the peri-operative education requirements of this patient cohort.

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Acknowledgements

Thanks are extended to Marie Grimes and Mary Buckley, stoma nurses at Cork University Hospital and the Mercy University Hospital respectively.

Funding

No funding was received for this research.

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Authors and Affiliations

  1. School of Medicine, University College Cork, College Road, Cork, Ireland

    Lisa Horgan & Aislinn Joy

  2. Department of Clinical Health Psychology, Mercy University Hospital, Grenville Pl, Cork, Ireland

    Helen Richards

  3. Department of Postgraduate Medical Education, Sir Charles Gairdner Hospital, Hospital Avenue, Nedlands, WA, 6009, Australia

    Lisa Horgan

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  1. Lisa Horgan
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  2. Helen Richards
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  3. Aislinn Joy
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Contributions

L.H.: study design, application for ethical approval, participant recruitment, data collection, interviews, data transcription, data coding and thematic arrangement, writing up of manuscript of 1st and subsequent drafts. H.R.: study design, data coding and thematic arrangement, review and editing of manuscript. A.J.: study design, data coding and thematic arrangement, review and editing of manuscript.

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Correspondence to Lisa Horgan.

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Lisa Horgan, Helen Richards and Aislinn Joy have no conflicts of interest to declare.

Human and Animal Rights

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Cork Regional Ethical Committee (ref ECM 4) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Written informed consent was obtained from all participants.

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Horgan, L., Richards, H. & Joy, A. The Young Adult Male’s Perception of Life with Inflammatory Bowel Disease and a Stoma: A Qualitative Examination. J Clin Psychol Med Settings 27, 560–571 (2020). https://doi.org/10.1007/s10880-019-09695-3

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  • DOI: https://doi.org/10.1007/s10880-019-09695-3

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